The best part of the day!

I am a morning person.  However until a few years ago, when we began to have consistent night staff to care for Matthew, I was a sleep-deprived morning person.  As a result I have carefully calibrated my caffeine addiction and appreciate a good cup of coffee.  My family knows not to talk to me until I have had at least one cup of coffee in the morning.  For a Christmas gift my eldest was thrilled to find pyjamas with owls and coffee cup images scattered all over the flannel pants.  As he noted, these were my two favourite things!  On one garment!

 

Today I had a morning nurse which is a tad unusual for a thursday. This meant that rather than doing Matthew’s care, I could drive David and the rest of the car pool gang to school.   Our kids attend a private, Mennonite high school about 20 minutes down the road so car pooling is an essential part of our life.  I like car pooling teenagers and know I will miss the experience when our youngest leaves for university in two years.  I find teenagers incredibly interesting and engaging human beings.  I love their ideas and fresh perspective on life.  I enjoy the car pool conversations and love that I get a glimpse into the lives of my kids.

 

After dropping the gang off at school I carried on to my favourite coffee shop. I hadn’t yet had breakfast and I was getting hungry.  More importantly I hadn’t yet had coffee!  City Cafe is a wonderful place with fantastic bagels and coffee.  It is a unique cafe where one serves themselves and then pays based on the honour system by dropping cash into a till.  No debit or credit cards.  Staff will make change if you need it, but their role is primarily to bake bread and bagels – and be friendly!  City Cafe is a place with a strong sense of community and it isn’t unusual to find yourself sitting with a total stranger if chairs are at a premium.  People chat as they make their morning breakfast or wait in line for the toaster.  I have met many wonderful people at City and have had many fascinating conversations.

 

Because you serve yourself  at City here is often a hub of activity around the centre island where people are doctoring their morning cuppa, toasting bagels, slathering jam on toast, and so on. Today was no exception when I stopped to get a toasted bagel and cup of joe.  As an aside, I LOVE bagels.  If I had to choose between a decadent chocolate dessert or a freshly baked bagel smothered in homemade raspberry jam it would be the latter – hands down!   There was a group of us jockeying for the milk and space at the cutting board and one older gentleman stopped and looked at all of us and with a smile on his face said, “isn’t this the best time of the day!  Fresh coffee.  Fresh bagels.  Jam. A new day.  Isn’t it all just wonderful!”.   The group around the island all laughed and agreed.

 

I am finishing that morning cup of joe as I type this blog post.  The bagel having been inhaled on my drive home from the cafe.  But yes, I have to agree with that gentleman.  Life is good and isn’t a good cup of coffee the best part of the day!

Anxiety and Visiting Angels?

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Like many parents, particularly those with a complex kid, every once in a while my anxiety about keeping my kids safe and healthy threatens to overwhelm me.  My guess is that most parents can relate to this feeling in some way or another.  However one time when anxiety threatened to derail me I had an unusual experience.

Before telling today’s story I need to share two bits of information.

First, while I am a person of faith the jury is out about my thoughts on angels and other supernatural beings.  I know many who believe in connections from the beyond and I envy their unshakeable faith and the comfort they derive.  Me?  For the most part I believe that angels live and breathe and walk among us.  An angel is the friend who walks through the door with a steaming cup of coffee after I have been up all night at the hospital with Matthew.  An angel is the person who shovelled my driveway when Matthew was ill and I was overwhelmed.  An angel was the person who hand delivered a prayer shawl.  Glowing angels from some otherworldly realm??  Probably not.

Second, you need a know a few tidbits about Matthew’s birth story.  As a rule I don’t share too many details about Matthew’s birth.  Simply put it was very traumatic and lots went wrong. Matthew is disabled because of what went wrong.  I would need to have trigger warnings everywhere if I told the story.  For this story I will share that bad stuff was discovered and I was whisked down the hall to a  surgical suite by health professionals while other health professionals were madly paged.  As a slightly humorous aside, a doctor was riding between my legs on the stretcher trying to hold Matthew’s (not yet delivered) head off a prolapsed umbilical cord while I was being whisked down the hall.  I bet that would have been, well, something to see.  In short order I was rendered unconscious and Matthew was delivered.  The last thing I remember was barfing on the anesthetist.  I awoke sometime later in a recovery room unaware that I had given birth.  A nurse with no details went to get my husband who was incoherent and inconsolable.  He had been afraid both the baby and I had died.  Initially I had no idea whether I had a boy or girl or what was going on.  I just knew things weren’t what they were supposed to be.   The hospital admitted they were trying to get a helicopter to airlift my child to MUMC.  I would eventually see him only for a few minutes before he was ambulanced to a NICU that could handle his care.

Fast forward two years and I am pregnant with our third child.  After the events of Matthew’s birth I am being treated as a high-risk pregnancy.  If I sneeze someone wants to run a test or schedule an ultrasound.  During this time I have repeated, disturbing dreams.  In every dream, like with Matthew, I am unconscious when I deliver my child.  I awaken in a ward room with three other new mothers, and every other woman has a beautiful baby.  I don’t have a baby and the hospital doesn’t know where my baby is.  They can’t assure me things are okay. Night after night I jolt awake shaking with anxiety about my third child.

And then one night, about a month before David would be born via a very scheduled and highly planned c-section (nothing was left to chance!), I had one final dream.  In this dream I once again awaken after having given birth.  Once again I am in a hospital room with three other new mothers who have healthy babies.  Once again my baby is not with me.  But in this final dream as soon as I am awake a nurse walks in and hands me my baby boy.  This nurse, who in my dream I know is a heaven-sent angel (don’t ask me why, I don’t believe in this stuff), tells me that my baby is healthy and will always be healthy and happy.  She tells me that this time I have nothing to worry about.  I do not have another nightmare and David is born healthy and squealing.  He is 16 now and is one amazing kid!

To this day I still don’t know if I believe in angels.  I only know that one visited me.  Oh, and I arranged for a private hospital room when David was born.  I didn’t want to take any chances I might wake up alone with three women who had just had babies.

Respite: One more blessed thing.

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Over the last few weeks I have been writing about the “one more thing” experience of many special needs parents.  The idea that there is always something that needs to be done and in the world of extreme caregiving those “one more things” are often invisible to the rest of the world.

Out-of-home respite can feel like one of those THINGS.  For those who don’t know, out-of-home respite are facilities that care for complex children and adults to provide their parents and primary caregivers a badly needed break.  Research is very clear that access to generous and reliable respite, both in-home and out-of-home, is one of the most significant factors in allowing families to cope with extreme caregiving demands.

But accessing respite takes a lot of work, time, and preparation.  Sometimes it almost doesn’t feel worth it.  First you need to book respite which involves an initial intake and filing formal requests for care.  These days many children/young adults require respite and there is no guarantee you will get what you need or want.  Then when your turn for respite arrives there is significant packing since you must bring all your child’s medical equipment and supplies.  But most of all there is the paperwork.  One must file medical orders, consents, lists of clothing, and so on.  It would take us hours to prepare for a respite admission.  And then one needs to transport their child and complete a formal admission.  We can never leave on a getaway on the same day we are doing a respite admission or discharge.  I can remember being quite envious of people who could just pick up and go somewhere without all the significant advance planning, packing, and running around.   However, for all the work it requires, I have always been aware that respite was vital to our family functioning.  Hence the blessed one more thing.

We began using respite when Matthew was about three years old.  Over the last fifteen years we have used out-of-home respite regularly.  When Matthew was his most medically fragile we used respite simply to fill the gaps in available home care nursing.  Try as I might I couldn’t stay awake 24 hours continuously and respite services were needed simply to manage his basic medical care. Those times were hard because we often couldn’t use respite for the fun, quality of life, family stuff.

When our kids were younger and Matthew was stable we used respite to allow our family to engage in activities not easily done with Matthew.  We would attend out-of-town baseball and ball-hockey tournaments with our eldest.  We would take our youngest to Stratford to attend the theatre.  We would take our typically developing kids camping, hiking, visiting family, and sailing – activities that are not particularly wheelchair or Matthew friendly.  For us, respite allowed us to strike a balance between including Matthew in most of our family life while also making sure our other two kids didn’t miss out on too much.  It bothered me that we had to fracture our family at times.  But it was our reality and I felt strongly that my other two kids deserved to have family time that did not always revolve around Matthew’s needs.

Sometimes we would use our respite time to have a date – just Bill and me – but sadly with all the pressures on our very limited respite time our kids’ activities usually took priority.  Couple time for parents like us can be as rare as hen’s teeth.

This past week, thanks to respite,  we had our first real, week-long, couple’s holiday in years.  We spent a week with our closest friends in Key West taking in the sights, spending time on the beach, drinking wine, and playing endless games of euchre in the evenings. We keep meaning to learn bridge but the learning curve seems steep!  It was a great week and I am grateful for the reliable respite care that allowed it to happen.

As the number of medically fragile children grows demand for respite services is reaching a crescendo and today’s young parents often don’t have access to the level of services we enjoyed when Matthew was younger.  Even more troubling is the fact that in many cases once kids turn 18 they age out of most of the available respite services with little to nothing available to replace such care.  This despite the fact that the kids are now bigger, often more complex, and parents are reaching a new level of burnout.  Yesterday I opened a letter from a local service agency noting that the necessary Ministry continues to opt not to fund adult (18+) respite services.  This despite the fact that the most reliable research available tells us that funding respite not only keeps families intact, but actually saves the government money when compared to funding long-term care beds and other associated medical costs for both kids and burned out parents.

One More Thing: Staff

Caring for really complicated kids usually requires hired caregiving assistance.  Most of us extreme caregivers figure out pretty quickly that if we want to sleep, grocery shop, or make sure our kids get to the dentist, we will need to have hired caregivers in our home.

Over the years we have had a regular parade of paid caregivers through our home.  For the first ten years of Matthew’s life we survived with pretty limited supports. But after the age of ten, when Matthew became very medically complicated, the team of paid staff in our home increased significantly.   For our family paid staff in the home is totally normal.  My two able-bodied children are so used to paid caregivers and nurses in our home that to them a household that resembles a group home is commonplace.   Bumping into a nurse in your pyjamas while getting a 3am class of water is routine.

For the most part the staff in our have been/are wonderful and become treasured members of the family.  We have been very, very lucky.   For families like mine it is not an exaggeration to say that paid caregivers in the home are what allow us to function.  Because of paid caregivers I now sleep 8 hours at night.  I am able to return to school and pursue my dream of a PhD.  Paid caregivers free up my time and allow me to take my two typically developing children to activities.  Paid caregivers ensure that I have attended my eldest son’s sporting activities and my youngest son’s dramatic endeavours.  Without paid staff I would be essentially tied to Matthew’s bedside and/or wheelchair.  Matthew’s health and necessary care would dictate when or how I could engage in anything – from special occasions, to necessary errands, to something as simple as taking a shower.  The overall functioning of our household, and my personal quality of life, depends significantly on the availability of paid staff.

But there can be a downside to all of this that can quickly enter the list of One More Thing. Staff are wonderful when they are available.  But staff quite legitimately get sick and need holiday time.  Those things tend not to ruffle my feathers.  I care about our staff and want them well and rested. But the situation can become more complicated.  Home care shift nursing is often less desirable than other forms of nursing.  Hospital nursing tends to better utilize nursing skills, offer better shifts, and provide better pay and benefits.  As a result sometimes we have had huge gaps in our nursing schedule simply because our home care nursing agency can’t hire enough nurses.  Matthew once missed a month of school because nursing was unavailable. When nurses don’t show up, or are unavailable, I am the nurse regardless of what I might have had planned.

And while most of our caregivers are walking saints who single-handedly improve Matthew (and my) quality of life, we have had some negative experiences that I find brutally stressful.  I have had nurses comment on everything from how I dress my son to the quality of my homemaking skills and snow shovelling efforts.  For the record my homemaking skills probably suck – but I don’t need to be reminded of that!   I once learned a nurse left Matthew in bed all day while s/he cruised Facebook and played video games (we were out).  I once learned that Matthew was being transferred in such a way that I was amazed his shoulders weren’t dislocated.  I have had staff decide they were going to get Matthew eating rather than use his feeding time – something that is downright medically risky.  My commitment to Matthew demands that I deal with these more egregious issues – something I find brutally stressful.  A huge One More Thing when these things happen.

We have had nurses refuse to work unless we crated our dog for the entire 12-hour shift. Disagreements with one’s spouse, or difficult moments with your kids – there is always an audience.  There is a sense that you are always being watched and perhaps even evaluated as a parent, wife, or person.

Dealing with these situations can be stressful.  I have had no training as a human resources manager, yet I often function as one.  When I hire privately, outside of an agency, I am responsible for soliciting resumes, interviews, reference checks, and so on.  I am responsible for organizing paycheques and staff rotations.  In some cases our family also manages employment insurance issues, taxes, and workplace safety.  Again, One More Thing.  Well, lots of One More Things!

And then there is the emotional toll.  When staff are in your home there is a sense that you always need to be “on”. You always need to be decently dressed, presentable, polite, and hospitable.  There is no room for down or bad days because you always have an audience.  You always need to engage in polite conversation even when your inner introvert is screaming you need a break.  Your home no longer resembles your retreat from the world and its pressures, but rather becomes a workplace teeming with people and responsibilities.  One More Thing.

But the opposite side of the coin is no staff.  And then my life would be unsustainable.  Forget my personal dream of a doctorate. I wouldn’t have the time and energy to manage my personal care or to engage adequately in the lives of my children much less read Heidegger.  My marriage would suffer.  Date nights, even walking the dog would go out the window.  Staff are a gift, but a gift with a cost.  And at times their presence is One More Thing.

One More Thing: Technology Edition

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I recently wrote about ONE MORE THING.  The cumulative toll of all the small bits and pieces of caregiving that can add up to TOO MUCH.   In isolation each Thing seems do-able.  But overall these Things contribute to the out-of-control life that is extreme caregiving.

I have a love-hate relationship with technology.  Technology is a huge gift.  In the first hour of Matthew’s day, alone, we use many forms of technology.  The day starts with me programming his feeding tube pump and administering meds via an air compressor and gastronomy tube.  I then transfer Matthew using a mechanical ceiling track lift into a dynamic wheelchair with lots of moving parts.  Matthew then is loaded into our van using a mechanical lift.  And this is only the first hour of our day.  When Matthew is ill we add things like a pulse oximeter and a suction machine into our daily routine.   Because of our reliance on technology and power for health issues we have a whole home generator hooked to our natural gas line.  We have an elevator in our house to allow Matthew to move freely between floors.  All this equipment is wonderful – when it works.

All this technology allows Matthew to live a healthy life at home and in the community.  Without this technology Matthew would likely not leave his bed.  Indeed, without this technology there is good reason to believe Matthew might not be alive.  The harsh truth is that kids like Matthew didn’t survive into adulthood prior to the availability of this technology – and they certainly didn’t live at home in bedrooms that resembled mini-hospitals.

If any of Matthew’s equipment doesn’t work life comes to a screeching halt.  If Matthew’s wheelchair has issues he spends the day in bed.  Similarly if his transfer equipment doesn’t work he’s stuck,  or I risk a back injury to move him.  If the van lift doesn’t work Matthew is house-bound.  If his feeding pump stops working we have a TOTAL crisis on our hand since my son has never tolerated gravity or bolus feeds.  And so on.

All this technology comes at a cost – financial and otherwise.  Despite scrupulous maintenance of all of Matthew’s equipment things inevitably go wrong, break, and just-plain fall apart.  Matthew has very powerful muscle tone and is very hard on his equipment – particularly his wheelchair.  It seems like I am constantly calling technicians for support and repair work.  All this equipment is a huge source of One More Thing.  In the last two weeks alone I have had to coordinate necessary elevator repairs as well as emergency van work, and emergency work to Matthew’s wheelchair.  While I have excellent relationships with a few local companies who move heaven and earth to be supportive and helpful (National  Home Health Care in Kitchener I am looking at you!), some companies don’t seem to appreciate the urgency that is associated with equipment malfunctions for people who rely so heavily on technology to survive.  There are times that one has to be an outright nag to get service, much less service in a timely fashion.  I find that part of my role as an equipment manager VERY stressful.  For Matthew and I all this equipment MATTERS.  A lot.

Oh, and of course there is the cost which I would remiss not to mention.  All this stuff costs money.  Lots and lots and lots of money.  Matthew’s wheelchair cost $32,000.  Yes, you read that correctly and it is NOT a typo.  In total all this technology costs thousands upon thousands of dollars and these costs are a huge burden to already overwhelmed parents.   Many kids go without vitally necessary equipment.  Parents injure themselves because they lack appropriate transfer equipment.  Only basic wheelchair and feeding pump costs are funded by the government, and only then up to 75% as a rule. The never-ending cost of repair visits and technicians’ add up quickly.  When it comes to the equipment parents are either required to cough up the money themselves, or more likely since the costs are exorbitant,  do without or search endlessly for funding sources which demand mountains of paperwork, multiple quotes, medical information, signed releases, and so on. Yup.  One. More. Thing.  Just to have equipment so your kid can get out of bed in the morning or have a shower.  Stuff most of the world takes for granted.

One More Thing.

I just got off the phone today with a customer service rep  who informed me that driving my wheelchair accessible van one hour to access service for the lift was perfectly reasonable in her opinion.  To date we have been able to access service for our van locally, but that has changed since our local shop was purchased by a competitor and the maker of our lift will not work collaboratively with a competitor – even if that is in the best interests of their consumer group.  I could barely control my rage.  How dare a customer service rep presume to be able to even guess what might be reasonable within the context of my life.  For an agency whose product is geared toward people who live with disabilities they might want to do some sensitivity training.

The idea that moving forward I will need to clear my day, arrange for a full day of nursing, and then spend almost two and half hours on the road to get my van serviced was enough to reduce me to tears.  I so don’t need this added complication.  It is One More Thing.

Today’s phone call was reminiscent of the recent phone call I had with the City of Waterloo who informed me that I would have to drive my young-adult son’s diapers to the dump weekly since they have suspended weekly pick-up.  Again, One More Thing.

You see for everyday people these Things are usually a no big deal.  Bi-weekly garbage pick-up.  No worries, we don’t generate that much garbage.  Car problems.  Got it.  I can run the car 5 kms down the road to my local Canadian Tire where it will get sorted out.  Unfortunately in the life of an extreme caregiver none of these mundane issues are straight-forward.  There is a layer of complexity that many cannot simply appreciate.

This layer of complexity is added to an already overwhelming life.  For those of us who are extreme caregivers these One More Things add up.  You see our lives are already beyond crazy.  We don’t sleep.  We don’t sit down to eat.  Our lives are completely out of control and rotate around the needs of our loved one.  We try to organize our needs into the nooks of crannies of life between medical appointments, illnesses, hospitalizations, and the ongoing hard work of caring for a complicated kid.  To throw in unnecessary, added complications like car appointments an hour down the road is enough to topple us over the edge, and it can be very frustrating to interact with a world that just doesn’t Get It.  It is infuriating when we communicate our needs and we are told we are being unreasonable, particularly since our lives are already pretty unreasonable.

The last month has been difficult.  Matthew has been sick.  My caregivers and nurses have been sick so I haven’t had a lot of help.  Our elevator needed repair.  Our van lift decided to stop working last night meaning that I spent most of today running my van back and forth to the shop.    In the last month Matthew has missed almost two weeks of his day program.  When he doesn’t attend day program I provide his daytime care, meaning any plans I might have had for my day go out the window.  When his caregivers get sick I step in and fill the void.  I am tired.  I am frustrated that the things I had hoped to accomplish remain on my to-do list.

 

And I am royally pissed off at a customer service rep who had the gall to suggest she might know what was reasonable within the context of my life.  You see Ms. National Customer Service Rep what you see as entirely reasonable is One More Thing in a life that already has way too many Things.  Since you work in the world of disability service it is truly disappointing that you don’t get that.  But more important than that, you might want to spend a few days in my shoes before you decide what might be reasonable and what might actually be unreasonable.